CADIZ, Ky. (11/29/13) – Kasen Paul Creed is a 5-month-old boy, who was born with a small nonfunctioning gall bladder and was diagnosed with a rare liver disease called Biliary Atresia.

BA, is a life-threatening condition in infants in which bile ducts inside or outside the liver do not have normal openings.

“He was 4 days old when I noticed something with his eyes and he looked as yellow as a bottle of mustard,” said Taylor Creed, mother of Kasen. “I felt like something was wrong but nobody believed me. Everyone kept telling me everything was normal and by looking at him, he looks like a healthy little boy.”

After Kasen turned 7 weeks, his family really began to notice some serious behaviors that didn’t seem normal for a baby his age. BA causes liver damage, scarring, loss of liver tissue and cirrhosis.

“He was sleeping more than a normal baby should. He wasn’t being active during the times he should have been either. He would eat and go right back to sleep,” said Creed. “So, I took him to the doctor. When Dr. Foster got the results back, she noticed that his salt, protein and liver enzymes sky had rocketed. So, she sent me to Vanderbilt in Nashville.”

When the emergency room doctors at Vanderbilt did further testing, they found out during an ultrasound that he did not have a functioning gall bladder and required surgery. At 58 days old, Kasen underwent a procedure called Kasai.

“When he went in for his surgery, they took out the piece of gall bladder and split one of his intestines and hooked it to his liver so bile had a place to drain instead of floating around in his belly,” said Creed. “We are waiting now to see if his surgery worked.”

Normally, patients who have BA have up to three or four Cholangitis infections within their first year, but spread out, not back to back like Kasen has undergone.

“After they did another ultra sound, they found he had Cholangitis for the fourth time,” said Creed. “So, then they decided to increase his Cipro antibiotic in hopes it would help get rid of the infection.”

The first major sign of Biliary Atresia includes jaundice – where both skin and whites of eyes turn yellow. Jaundice occurs when the liver isn’t able to remove the bilirubin and instead is absorbed by the liver, then processed and released into bile. Then the blockage of the bile ducts forces bilirubin to build up in the blood. Other signs include dark urine, gray or white stools, and slow weight gain and growth.

“When you have a normal liver, it has a duct at the end where it closes,” said Cathy Bush Cravens, Kasen's grandmother. “When the bile pushes through, once it goes into the gall bladder and the intestines, the duct closes off so no bacterium enters the liver. So, with his duct not being there, there wasn’t anything to push through and was backing up and coming out his small duct. His ducts still do not close and bacteria free flows.”

A liver transplant is a definitive treatment for those with BA and the survival rate after surgery has increased over the years. Infants with BA are more likely to need a liver transplant. The extent of damage to the liver prior to the transplant determines how soon an infant would need the transplant.

“He’s eventually going to have to have a transplant,” said Cravens. “The goal is to get him to 3 years old before he has to have one. And, the other day at his appointment, the doctors were looking for bile lakes. If those small ducts close off completely, what will happen is the bile will start pulling in the abdomen which would mean he would immediately go on a transplant list.”

Kasen currently takes multiple medications daily and requires specialy ordered formulas to help break down milk and proteins to be easily digested.

“Kasen has been out of the hospital for a little over a month now,” said Creed. “This is the longest he’s gone. Before, he was going every other week.”

In August, Craves started a Facebook page solely dedicated to Kasen where people can follow his updates and send donations and prayers. A lot of Kasen’s medications are not covered on his insurance and must come out of pocket, which gets very expensive for his family.

The family relies a lot on donations to pay for these medications and to help pay for gas to and from Vanderbilt and parking. Frequently Kasen is hopsitalized for up to 10 days following a doctor's appointment.